Chapter 10 Live Laugh Love Lose
As Jack's body continued to deteriorate we found ourselves behind the eight ball in preparedness. Frank and the boys pulled together a team of friends and co workers as they worked with surprising speed turning the garage into a master bedroom, installing a sunken shower with a little ramp so I could wheel Jack into and out of the shower. Equipment was being delivered on almost a daily basis to make his life and my life a little easier.
The king size bed "craft-matic dual adjustable bed as seen on TV" made the biggest impact on our lives by far. Since June, Jack had been sleeping on the recliner while I slept on the sofa next to him. Eight weeks of sleeping on the sofa took its toll on me. I had to admit I was worn out. God it was wonderful to climb into bed again, with my Jack right next to me.
That first night we held hands lying side by side until we fell asleep in total comfort. The next morning I tried to wake him with that ill fated blow job. I felt it important to christen the bed. Afterward we lay in bed. I held his coffee to his mouth giving him sips as I sipped mine.
Josh had decided not to go away to college. A decision I wasn't happy with at all. He deserved his turn to live in a stinky dorm room, wear stinky clothing because he would resist dong his own laundry, and deal with keeping track of his life on his own.
We argued and argued but that kid can be so stubborn! I gave in when he broke my heart, when he reached into my chest and pulled away the protective covering I had placed there.
"My father is dying! At his rate of progression we'll be lucky to have him with us at Christmas. I am not leaving his side no matter what you say."
"Shut your mouth! Not another word, do you hear me!" I grabbed the counter top to keep myself from falling. Everything was going white; the blood was pounding in my ears. My legs felt weak, I couldn't hold myself up anymore. I was going to lose my bowels or vomit, one of the two would happen any second now, but all I could do was slowly sink to the floor.
"Mom, are you alright?"
I felt Josh's arms around me but I couldn't focus on his face. I waited for the vomit to come.
"I'm sorry Mom. God you don't know how sorry I am. But I can't pretend it isn't happening. It's happening. We're losing him and we can't stop it. He needs you now Mom. He needs you to be strong for him."
Josh was crying now. I could hear the sounds of my little boy crying coming out of the grown man who was holding me.
"Soon he won't be able to talk at all. He already chokes on his food and I'm trying to convince him to allow a feeding tube. Do you realize how much weight he's already lost? You weigh more than him now Mom. Think about that. You weigh more than him because he is too tired to chew and swallow. Are we supposed to watch him starve to death?"
I vomited. Why was he doing this to me?
"No more pretending for you and me. No more Mom. He needs you and I need you. Together we're going to make him comfortable. Together we're going to keep his last months with us real. We're going to be real happy, real funny, really prepared, and really convincing that a feeding tube would be less painful for all of us. We're going to let him know that when he's ready to go, we will let him go."
"Let me go." I struggled to break free of my son's grip but he wouldn't release me. "Let me go!"
"No, Mom, you're not going to hide in the closet any more. Remember hiding with me? Remember how I closed the curtains in the house and pulled you into the closet? Remember how safe you felt? I'm still here, you're still safe. But now you have to help dad feel safe."
"What?" Help Jack feel safe? That didn't make any sense.
"He's afraid you're going to force him to live for years and years completely locked in. It's medically possible you know. Imagine being wide awake and not able to move anything, not even open your eyes. Imagine not being able to even move your eyes balls, forced to stare at one scene all the time. Imagine being completely helpless, more helpless than a newborn because even a newborn can communicate through crying. Are you imagining that Mom? How safe do you feel imagining such utter helplessness?"
"But they might find a cure? Stem cells might work? If he can just hang on until we find a cure..."
"The stem cell project won't even be testing those who have progressed to his stage for another two years and that's only if phase I proceeds without any safety issues. You know all this Mom. Two years down the road, maybe. But I'll be damned if I'll allow him to live locked in during that whole time hoping the stem cells even work. They aren't even embryonic stem cells, so there's more that can go wrong. No, I won't allow you or anyone to torture Dad waiting for a long shot."
Josh pulled me forward so he could look me in the eye.
"He needs to be given control over when he's had enough. He needs to hear from you that when he says it's time, you will let him go. Let him go Mom. This is his decision not yours. Let him go!"
"But I don't want him to go..." I could say no more and could only cry as I silently repeated in my head; I don't want him to go but I have to let him go. No! Have to let him go? No. Have to let him go. No, I have to let him go.
Oh God what had I done to my son and my husband?
"Oh Josh, my God, my God, I'm so sorry. Again you save me from myself. You deserve a mother not a blathering idiot. I'm so sorry Josh. My little boy Josh, I'm so sorry." I babbled on for a few more minutes before Josh spoke again.
"Tell me you will let him go. Tell me you will tell him. You need to say it Mom, you know this is how it works."
"I'll let him go Josh. Dear God forgive me. I'll let him go when he decides no matter how much it hurts. I'll tell him that when he's ready I'll hold his hand and kiss the fear away. I'll tell him we'll meet again. God, oh God, I'll tell him to save a place for me and that he'll always be with me." I could say no more than that.
Josh held me for a while and told me I was doing the right thing. I was brave and strong enough to get through this. How did my son come to sound so like my husband?
I wiped my eyes and looked at my baby son. "You sound just like your father, you know that?"
"Yeah, so I've been told. Dad says I sound like you, you say I sound like him. You both are alive and well in me."
"Yes, alive and well in you, my son."
And so it came to be that I was prepared to allow my husband the dignity and control over his death. When I had that conversation with Jack it was difficult for both of us, to say the least. But it was oddly liberating to express our fears to each other. As the pretenses slipped away the strength and courage came pouring in. I don't think I'll ever be able to understand how that worked. I remain grateful that it did, that Jack was able to take strength from me, when he needed it.
Jack did agree to have a feeding tube surgically implanted. Once he learned that he could still eat by mouth and could even have a beer poured down his feeding tube, he was all for it. Eating was tiring but it remained an enjoyment.
My ardor for lovemaking cooled significantly after we had that conversation. I simply couldn't bring myself to be greedy, to seek my own pleasure. I only wanted Jack's pleasure. Guilt can do a horrible thing to a mind. My guilt for having almost forced the death of my husband prematurely in order to avoid a fate worse than death was just too much for me to bear.
I woke him up each morning seeking his release. Usually I was successful. His speech was almost completely incoherent by the end of September and we eagerly awaited the arrival of a special computer. It was called an eye gaze system. A camera mounted on top of the screen tracked and followed the movement of his pupils. When he blinked, it was similar to a mouse click and whatever letter, word or hyperlink the curser had been resting over was now selected.
As far as ease of conversation, it lacked in a huge way. The boys would simply say, "It sucked big time!" I found myself in agreement with their wording. He could communicate yes, but it was so slow and halting that he rarely had much to say unless he was asked a direct question.
"This isn't so bad, is it Jack? I mean we're both comfortable, we're together, you're not in pain, we can hang on like this for a while, right?" I had put him back in bed after his shower then I went to take mine. He had been playing around with his computer waiting for me to finish.
Yes, I was still holding out hope he would hang on and stick around. But in my heart of hearts I saw how it pained him to be on the outskirts of everything. How many times I saw him begin to type something into his eye gaze only to have him give up because the conversation had moved on. Yes, his quality of life was nothing like it had been a mere seven months ago. But currently, his life did have a measure of quality and that had to mean something?
"no not bad is good when u r quiet long so i can talk" Appeared on his screen.
